Rifton Pacer Miracle

One thing that I’ve wanted for Anne at home has been a walker. Anne’s not quite ready for a simple walker just yet. But, a couple of months ago, when Anne was being fitted for a wheelchair, just for fun, they tried Anne in a gait trainer. A gait trainer is a fancy walker with lots of options for support. You can attach a pelvic support or a trunk support, arm supports, ankle supports – and they can all be used in different combinations to customize the gait trainer for the child.

When Anne was in the Day Rehab program, I asked about getting a gait trainer for Anne at home, but it just didn’t work out…

Enter Anne’s new volunteer PT. She’s actually a professional PT in real life – she just feels called to help Anne. So when a vendor came to her work demonstrating gait trainers – she immediately thought of Anne.

After we talked, and I exclaimed, “That’s what I’ve been wanting!!!!” – she went to work, calling the manufacturer and then the local distributor hoping to find one that we could just TRY for Anne. After the PT finished telling Anne’s story, Charlene (the lady at the local distributor) said, “You tell Anne’s mom that she has a whole team of people working for Anne!” And the next day, Charlene emailed to say that they were DONATING a gait trainer to Anne!!!!

We went to pick it up today. Anne was treated like a rock star! All the employees watched and snapped pictures as she was fitted for the gait trainer. Anne turned to her PT and said, “Is it REAL that I’m going to be able to walk into church by myself?”

Anne has taken a few steps by herself today. We hope she’ll be taking much more in the near future!!

It is such an honor to be in the middle of all of these miracles that God has performed for Anne. He does this through HIS people, like the PT and Charlene and Anne’s speech therapist and through our church family and community. He continues to provide perfectly for sweet, little Anne. It’s all amazing.

PROFOUNDLY grateful! -kathryn

BTW: here’s the link for Anne’s new gait trainer. Rifton Pacer gait trainer

Life has been very good lately…

We had a wonderful visit with family yesterday. Eric’s family from France are in the States for a few days. As we gathered with everyone, Anne seemed more lucid. Her eyes were bright, and she seemed less impulsive than usual. It was a good time.

This morning, Anne’s PT visited. It is so clear that she is God’s provision for Anne right now. She spent extended time with Anne, and Anne seemed to perform well for her. The PT is genuinely excited to work with Anne which is so encouraging to me. She’s so knowledgeable and experienced. I’ve learned so much from her already!

One interesting observation she made was that Anne’s muscles have good strength and seem to work well. Her brain just needs to be rewired to move them correctly. This requires that we are consistent with her exercises. She seems to learn quickly – but she doesn’t carry over new skills from day to day. Repetition and consistency are very important for Anne – two things that I do not excel in.

So please pray that I might be disciplined to do Anne’s exercises and also creative to see ways I can incorporate ‘therapy’ into our daily activities.

One last thought. I’ve had more peace about Anne than ever before. I think it stems from two things… First, acknowledging that Anne is forever different is a step toward acceptance – which is one of the stages in grief. In other words, I don’t feel as weighed down by grief as much as before (that could change, but for now, it’s nice :-). Second, I feel like I’m resting more in God’s hand and plan for Anne. It’s easy to place my trust in good things – like therapy, nutrition or Anne’s progress – but ultimately, God has the final say about Anne’s life. It’s refreshing to find rest in God alone.

Thankfully, kathryn

A different Anne

This evening Canon and Kate built a little train in the driveway made of a bicycle and two tricycles. They connected all three with bungie cords. Kate and Canon rode on the first two with the third empty. Canon then stated enthusiastically: “when Anne is well, she can ride with us!” Kate and Canon had so much fun with great laughter as they rode in big wide circles while the funky train weaved back and forth with only moderate control. I so wanted little Anne to be a part of the joy that kids experience in this kind of play. . . . .maybe one day God will bring Canon’s wish to our minds as we see Anne playing with her brother and sister. . . . .

Since Anne has been home all day these past couple of weeks, Anne’s deficits are more apparent. Canon has been more sad and moody. Noticing the change, Kathryn asked Canon why he was feeling down. Canon said: “Anne just seems so different. I can’t play with her like I used to, and when I try to talk to her, she starts talking about something else.” …meaning that Anne has a difficult time staying on topic.

We’re all very sad that Anne is so different. She’s not only different because of her physical and attention deficits, but her personality has shifted as well. Simply put, all the intricate connections in her brain were changed by the injury.

On the flip side, we get to watch God build Anne into what He wants her to be. He cares for her more than we can imagine. He has already called an OT, PT and Speech Therapist to work with Anne while she is home. These women individually felt God calling them to use their skills to help Anne – and stepping out in faith, God is using them to richly bless our family!!

-kathryn and eric

Slow and steady…

Anne continues to make slow but steady progress. Frankly, it’s hard for me to pinpoint specifics because I see her everyday, but those who see her less frequently assure me that she is improving :-)

Since caring for Anne at home, there are certain areas that are physically difficult for both Anne and me. I’ve found myself praying specifically for two things…

That her muscle tone in her legs (which is extremely tight due to her brain injury) would decrease so that she might be able to control her legs and walk, and
That she would resist the impulse to put everything in her mouth and also to drop her food on the floor!

As you can imagine, meal times are a bit stressful, but Anne has made improvement here too – instead of throwing EVERYTHING on the floor, she only throws about half. Slow and steady, slow and steady :-) There WILL come a day when she eats normally again!!

Congnitively, Anne, again, is steadily improving. One of her PT’s commented to me today that everytime she sees Anne, Anne seems to be a little more aware and ‘alive.’

Thank you for your continued prayers and support. We are constantly amazed at the sacrifice of time, gifts and talents so many of you have blessed us with. It’s been a profoundly rich blessing for our family.

Taking one day at a time… -kathryn

Saying “goodbye” to the CIRU

Anne and her primary PT

Anne and her primary OT

Anne and her primary SLT

Feeling weighed down…

I’ve put off updating the CaringBridge site because I don’t feel like there’s anything exciting to report… I guess that’s the nature of Anne’s injury… recovery is slow. I’ve been struggling with impatience lately :-)

I still feel weighed down by the fact that my sweet girl has such a serious injury. Today she looked at a picture of a black dog, and she called it a sheep, and then a horse, but couldn’t find the word “dog.” She has to concentrate so hard to answer such simple questions.

She’s working just as hard physically. Today her PT asked her to bend her left leg. Anne was laying down flat on a mat. You could see her jaw clench in concentration as she raised her left leg straight up, and then after a few seconds she bent her knee in a jerky motion. She repeated this for the therapist a few more times – each time having to concentrate like crazy just to bend her knee.

As I watch her, I feel this strange mix of joy and sadness – I’m so proud of her, but grieved to see her struggle so…

God does give me glimpses of joy. Yesterday evening, a bunch of family came to the hospital to eat dinner together. There was cheerful banter as everyone ate burgers and fries in Anne’s room. Anne just sat gazing at everyone with a content smile. The only reason we were together was because of Anne. That’s a gift that’s come out of this tragedy.

And then today… I took Anne for a walk. Anne can reach up and touch all the buttons for the elevators. I thought back to Anne’s first day in rehab. Her therapist asked her to push a HUGE yellow button. We all cheered as the therapist had to place her hand on the button and she was BARELY able to press it down. She’s come a long way to be able to so easily find and press the elevator buttons! That was a sweet reminder from God.

Perseverance – emotional and physical. That’s our need right now :-)

Please pray:

That Anne would gain endurance and not tire so easily. When she tires, she gets extra emotional, so also pray that she would be able to regulate her emotions.
That Anne would make great strides both cognitively and physically in the next 10 days before her discharge date – specifically that she would be able to sit unassisted and communicate consistently what she wants and needs.

Thank you! -kathryn

A Good Day!

Her physical therapy session was her most challenging to date. Her therapist really pushed her, and Anne rose to the challenge. She tried her absolute best to do EVERYTHING her therapist asked of her even though it was extremely difficult. She was so brave, and I’ve never been prouder of her!

Her speech therapist took some time to evaluate her word retrieval abilities. It was tough to watch Anne look at a picture of a cup and not be able to remember the word. But again, she tried her best and was able to remember more than half of the words she was asked.

Tonight, she became more conversational. It’s kinda like a switch came on, and she just started talking more loudly and using more words.

The brain is God’s creation, and it is amazing. Little Anne is building new pathways. Little by little, God is helping her to heal.

We are very grateful. -kathryn

Disappointment & Glory

The past two days have been quite a journey! God has been so tender and gracious to give me a sweet gift of encouragement at the end of yesterday (Monday) – which was one of the hardest days of my life …and then He continued to show me His goodness, as today (Tuesday) was one of the best days of my life!

Where to begin?

Yesterday was hard because of the disappointment over not removing the drain and therefore not moving to rehab. Anne’s tremors increased yesterday b/c they lowered her anti-withdrawal meds… She is having a painful time coming off of all the heavy narcotics that were in her system for weeks. My eyes were focused on what was seen – her agitation and pain – instead of the unseen…

God in his tender mercy chose to encourage me from the most unlikely source… her neurosurgeon! He is one of the best in his field, but has been very frank regarding the severity of her condition. He always chooses his words carefully so as not to give us false hope. But last night, he cautiously offered a morsel of hope as he shared a story of a former patient with injuries similar to Anne’s …She went on to be at the top of her class in college. The poor doc didn’t know how to react when I sat and wept – just out of thankfulness that God knows my heart – and knew that I needed encouragement…

Which leads me to today. It was a glorious day. The Physical Therapist (PT) let me hold Anne. Not like the other day when I just sat beside her and hugged her a little – but REALLY hold her. I sat in a rocking chair and cradled my 5-year-old girl like a baby. I sang to her, prayed for her and cried over her. I felt like all of heaven stood still and watched as I held my precious Anne.

But the blessing didn’t stop there! After I held Anne for 30 minutes, and Anne sat in her chair for an HOUR, the Occupational Therapist (OT) and Speech Therapist (ST) came to work with Anne. They sat her up on the side of the bed. She was able to hold her head up a little; she chewed and swallowed ice – but here’s the fun part – she actually listened to the OT give a command: “Anne, if you want to rest, push back against my hand.” And she leaned back with her body against the OT’s hand on her back. And then the OT sat her up again, repeated the command, and Anne did it again! We laid her down, cheered for her and she smiled the biggest smile I’ve seen from her yet!

Later I saw all 3 therapists in the hall – they were all clapping and pumping their fists (it was quite a scene…) so I walked out and asked, “so, did Anne do well today?” And they looked at me and said, “Well? She was AMAZING – she responded to a command TWICE! – That’s reason to throw a party!!”

Truly, a miraculous day. I’ve cried many grateful tears today. Thank you all again for supporting us as we walk this road. We still have a long way to go, and even though we don’t know what the end looks like – we trust that God has good planned for Anne. Amen? AMEN!

One final note: We think Anne’s drain will come out Thursday – which means hopefully Anne will be in rehab by the weekend. We will pray for just that :-)

-kathryn

Another great day…

5-2-10

Anne made several significant steps today…

The PT and OT worked together to sit her in a chair. I think Anne really enjoyed herself :-)
The Speech Therapist evaluated Anne’s swallowing and she did great. The ST put a swab with lemon juice on Anne’s tongue, and Anne swallowed in response to tasting the lemon.
I didn’t see this, but Eric, the PT and Anne’s nurse ALL told me that Anne moved her fingers a little when the PT asked her to. So that’s a big step for Anne!

Tomorrow, they MIGHT remove Anne’s drain – which means, she would be a candidate for rehab. Wee-Hoo!

A few personal notes…

I (Kathryn) went to church this morning for the first time since the accident. It was so refreshing to focus outward in corporate worship. We sang the words, “worthy is the lamb.” Jesus is indeed worthy of our all.

After church, our friends the McKinney’s came to visit. This was the first time the McKinney children got to see Anne. When Canon’s best buddy, Joel, walked in her room, Canon said to Joel, “Isn’t she beautiful?” He’s the BEST BIG BROTHER EVER!

Please continue to pray…

That Anne would progress and we would not grow impatient with the speed of her recovery but instead – remain grateful for every little step God helps her make.
That we would persevere in prayer for Anne’s healing and also persevere in our trust in God’s good plan for Anne and our family.

Still clinging to Jesus – kathryn

Therapy begins

The OT and PT came today and wore her out! They both sat her up and challenged her to hold her head up. She’s doing about 30-40% of it herself! She’s also showing more emotion on her face. She grimaces in pain when the therapists move her in a way she doesn’t like. Any emotion is a good sign at this stage.

When she sat up, the PT let me sit behind her and hug her. I’ve been longing to hold my sweet girl, so I was thankful to hold her – if only for a moment.